INVITATION
from the DANISH INSTITUTE for HUMAN RIGHTS to EMEA DANSK ME FORENING

March 2012

Invitation from
the Danish Insitute for Human Rights to

Dansk ME Forening
to participate in panel discussions

regarding how
well and effectively the UN Disability Convention

has been
implemented in Denmark, and

an invitation to
the launching of a new web site on

February 28th
2012

Over the last
decade complaints about the way disabled, ill and old people are treated by
the health and social system in Denmark have increasingly been sent in by
different handicap organizations and private persons involved. Nothing has
happened to better this situation. On the contrary, national economic
problems have been used as an excuse for constant cut downs. This is what it
is - but at the same time a tendency to treat the clients in a most cruel
and humiliating way has found its way to our system. This is not solely a
problem for ME patients. Several other groups of handicapped are
experiencing the same thing.

This was our
situation, when we in May 2011 received an invitation from the Danish
Institute for Human Rights http://menneskeret.dk/forsiden
to participate in 5 panel discussions together with 130 other Danish
disability organizations, questioning how well and effectively the UN
Disability Convention has been implemented in Denmark.

We were honored by
this invitation since no other ME or ME/CFS related group in Denmark were
invited. We found it important to accept this invitation, because this way
we could point at some important flaws in implementing the UN Disability
Convention in Denmark and at the same time make ME known as an organic
debiliating disease.

As it turned out,
the dates set for these panel discussions were identical to the dates set
for the ME/CFS Conference and EMEA Annual Meeting in London last year, so we
asked the Institute for Human Rights, if they could suggest an alternative
way for us to comment as we found this very important to discuss. They
immediately suggested that we send in our written comments, which would be
included in the panel discussion material. Comments from all 28
participating handicap organizations would, at a later date, be added to a
brand new web site on the UN Disability Convention.

When asked, the
Institute for Human Rights answered that the initial idea for this project
was to first analyze the overall situation in Denmark, regarding the
implementation of the UN Disability Convention, and after that to take up
any crystal clear violations of the Disability Convention - or of Human
Rights for that matter - for further investigation.

We thoroughly went
through all the articles in the UN Disability Convention, and added our
comments at the end of each article relevant to us. We were determent to
point at the fact, that although the diagnosis ME was legally and officially
registrated in Denmark, the Danish Board of Health continued to claim that
ME doesn't exist, and also accepted the general practice of GP's of giving
other diagnoses in stead of ME, allowing psychiatry to take over. We
attached three personal ME patient stories to verify our comments.

Two and a half
month later, in August 2011, the Institute for Human Rights contacted us
again and informed us that they found the content in our comments under
Article 23 (about Respect for family and home) worrying. They would now like
us to deepen our comments further and also produce a 2 minute video as
documentation.

A family with a
daughter who has been seriously ill with ME for the last five years were
willing to give an interview. What this family has been going through,
caused by their GP, hospitals, therapists and health and social authorities
goes beyond imagination. It does represent violation of both Human Rights
and the UN Disability Convention.

Our short video
and our comments were very well recieved by the Danish Institute for Human
Rights.

On our part, we would like to add, that it has been a very pleasant and
constructive experience to cooperate with the Institute, and in the most
friendly and obliging atmosphere.

On February 28th
the launching of the new web site on the UN Disability Convention took
place, and we were invited to attend this event to see our comments and
video being published.

To see our
comment: write ”artikel 23” in the Search box on top of the site, click on
the paragraph with our name in it (Dansk ME Forening) and this should get
you directly to our comment. We have made an English translation right
below:

Dansk ME Forening's
comment on Article 23:

What are in your
opinion, the biggest challenges within the area covered by Article 23?

Basically we consider the biggest problem to be the focusing on politics and
money at the expense of a decent view on human nature, morals and ethics. In
our case this means the decisions made by health authorities and politicians
that ME is a functional disease that only exists in the head of the
patients.
The responsibility and struggle that adults, children and adolescents
suffering from this disease has to overcome is solely resting on their
shoulders only, because - theGP in generaldoes
not know what this disease really is about –
school is a
place where parentsfor years have to fight to provide their ME sick child tailored tutoring,
because the child, due to illness, for periods, or maby all the time, has
great difficulty attending school, if the considerations necessary are not
provided – medical specialistsdo not understand the seriousness of this disease and often cannot agree
on which diagnosis to give –
the hospital physicians,
who renounce the severely ill ME patients, children and/or adults, because
they do not dare to take the responsibility for such ill patients and
therefore initiates sectioning to a psychiatric ward, believing the parents
are the problem in the case of children – nursing staff in hospitals and
home nurses whose working routines cannot embrace the special needs ME sick children
and adults have – the municipality that refuses to provide special help og aids to children/families
– caseworkers who are much too eager to initiate sectioning of children
with ME, especially if the parent is single.

What do you suggest Denmark need to do to solve these challenges?

We would like to encourage the
national health authorities and the politicians to

- to adapt to their own
classification of diseases – (in this case the classification published by
the Danish Board of Health, based on the WHO ICD-10.

- to let go of unfounded prejudice towards this disease and take information
on this disease from people with many years of experience or parents to
children with this disease seriously, so that children, adolescents and
adults, suffering from this disease, can be met with respect and decent
treatment, and receive the practical help and support they need in order to
be able to have a full life. Prejudice or lack of money should not be used
as an excuse to section children or adults with this disease or to omit to
provide the tutoring or education needed for the sick child.

- to initiative serious special education for physicians, nurses, carers and
staff at social and health offices regarding treatment, nursing and caring
for the seriously ill ME patients and their families, including children
with ME, and also offer special courses for teachers, school nurses, school
psychologists and educators on the handicaps these children suffer from.

[Next is the video showing an interview with a family with a severly
ill 23 year old daughter, who have been dragged through almost
everything terrible, you can think of – and then a little more].
The video is subtitled in Danish.

Also this meeting
was an encouraging experience. Several politicians, including the Ombudsman,
attended this meeting and overheard the conclusion made by the Institute for
Human Rights, namley that Denmark has huge problems to quite fulfill the
implementation of the UN Disability Convention.

As it appears in
our comment above, the overall problem seem to be – not so much the economical
problems in our country – but the way the lack of money influences many of those
imployed by the authorities to treat disabled clients in a disrespectful way, as
though they aren't worthy of a the respect that is due as human beings – and
this despite the fact, that they have paid for these services throughout their
entire life through taxes to the state.to decent approach or the decent
treatment, they are entitled to as human beings.

We have in many
ways a very fine and comphrehensive health and social system in Denmark, but
ethics and morals seem to have walked out the backdoor because of a still
growing economic crisis. In stead of helping and supporting disabled people, the
state has demonstrated a tendency to ”take over” and get paternalistic. And
unfortunately, for many of our seriously ill ME patients it is a fact, that they
have been made worse, because they haven't received the help they are entitled
to or the wrong kind of treatment has been forced on them.

The Institute of
Human Rights are determined to change this. Society should follow up the terms
they have accepted by signing the UN Disability Convention. It is NOT the other
way around.

We will keenly
follow the independent work of the Danish Institute for Human Rights as well as
participate in this as much as possible. If our comment appear to have played a
role in some important changes in Denmark, we will certainly be very pleased,
because ME patients will benefit from this too.

And who knows?
Maybe the proposals for improvement, made by the Danish Institute for Human
Rights, will be recognized in other countries as well, and contribute to changes
in other countries.